Full and Happy Life Despite MS

[thatgirl]

I was diagnosed with MS during my final semester of college just over 8 years ago. I went to bed healthy on Sunday, woke up with terribly blurry vision on Monday, and was diagnosed with MS on Friday (after numerous doctors and tests). Spending time on boards like this make me realize how lucky I was to have a quick diagnosis, but at the time I was devastated never realizing my vision problems were so serious, and I remember crying in the elevator as I left the doctors office alone that morning.

One of my friends has recently been diagnosed with a degenerative neurological disorder during the home stretch of her PhD program, and it really takes me back to my initial diagnosis. Forums like this one were invaluable when I knew nothing, but they quickly became overwhelming and discouraging when I considered what the future may hold. My friend is considering giving up on her degree when the light at the end of the tunnel is so bright, in part because of the antidotes of patients she reads online. I wish there were more positive antidotes posted as well.

I follow a number of MS boards/forums, but I feel guilty about posting because I know I have been extremely lucky with respect to my disease course. I'm thinking these boards may be biased toward suffering if others have similar feelings as me, so in honor of my friend and her struggles, I would like to invite you all to post your achievements despite MS.

Since my diagnosis I have earned a PhD in biomedical research and have run multiple marathons. MS has not caused me to miss a single day of work directly (the post-steroid crash did result in missing one class in college and one day of work more recently). If anything MS makes me work harder to enjoy each day and live life to the fullest while my body will cooperate, since I don't know what the future holds. I would like those who are newly diagnosed to know that MS is not a death sentence, and I hope others who have a full and happy life despite MS will post here too. Do you continue to meet up with friends for monthly poker night, play adult league soccer, make it to every one of your son's football games? MS does not have to mean the end of life as you as you know it.

[Dale76]

Well I see your point it is a matter of prospective. I read a lot of posts on here from people who are less effected then me & some that are more, I get inspiration from both. Unfortunatly it seems mild cases like yours are not as common, or maybe less of those people felt the need to get involved in an online community.

If I read about someone who has it worse then I feel fortunate myself & that is the motivation I need to stop feeling too sorry for myself.

It is also important to remain realistic too, just because you were able to finish your schooling & continue with your life doesn't mean your friend will be that fortunate. Quitting her education now may be the right move for her situation. I 'm very glad I did not invest 8 years into an education as I'm no longer able to work and I'm only 28. For some MS is a death sentence...

Sorry I'm not trying to add to the negativity but being overly optimistic can be just as dangerous as being negative.

I still do accomplish things, I have hobbies I work on & I have a family but it is not the life I had envisioned.

[Thinkimjob]

I do understand. I ducked MS World-y type forums, for a long time.

When I was first diagnosed I read every bloody word anyone ever blogged on MS, then I got past the initial shock and awe, and I didn't need to "talk" or think about it.
A mostly pleasant ten years passed.

I remember the day it all went wrong. I had to be bridesmaid at a wedding, had to be spray-tanned, in the NUDE, yeah, no, but why, and wear the single most hideous orange dress ever created, plus I had to have my hair 'tinted' and it came out black. Walking up the aisle, my leg went numb and my hip threw out.

It never came good. Should have seen the bridal waltz.

Now, I'm afraid I can't pretend it isn't as bad as it is. The idea that everyone's MS is different, is true up to a point, but mine is kind of starting to resemble all the others I ever read about.

I can't pretend to be positive. It would be dishonest. Truly don't want to depress anyone, because I, as a non-doctor, would say anyone newly diagnosed and taking the new drugs probably has a good 20 years before it all goes to hell.

[KatieAgain]

May I suggest the website Active MSers? I think it is more suitable for what you are asking. And not as depressing.

Your friend is grieving. Please let her do so. Being a good role model for her is the best thing you can do for her. You sound like a good friend. She will find her way and I believe she will finish her degree in her own time. And I sincerely hope her "flavor" of MS is as kind to her as your flavor has been to you.

Accomplishments, hopes, and dreams are subjective. They change with time and are as unique as a fingerprint.

BTW...I have had two dear friends die from MS. Both were 50. Last week an acquantence of mine's BIL died of MS at 54. We have people on this board whose parents died from MS. So you can die from MS...but it is still fairly rare.

[JerryD]

You are truly a lucky MSer. I wish that I could function as well as you seem to be functioning. Good luck on your MS journey. I hope that you keep on feeling well. Don't feel guilty that you have 'pulled the brass ring' on this MS merry-go-round. Keep posting and reading the boards.

[KitOP]

I think that your story can be an inspiration to many. We all know that not everyone has the same experience with MS. Personally, I love to hear stories like yours!

Many people live good lives with MS. They can remain active, work, drive and be happy. It's not all gloom and doom.

I had to give up work 7 yrs ago now. Do I miss it? Of course I do. But you know what - during that initial time that I was on STD, I was able to be with a dear aunt and my Mother during their last days on this earth. I fell so blessed that I was able to do that and be there for both of them.

It's also then when I discovered MSWorld. I can't even begin to tell you what a Godsend it has been in my life. Not only was I asked to become a volunteer, but I have also had the opportunity to meet some very wonderful people through the site. I consider many of them true friends, we can never have too many of them in our lives.

My husband & I love to visit the Smoky Mts in TN. There are a couple of trails that we walk, take in nature and relax. Do I walk a little slower and have to take a break every now and then. Of course. But I still do it and for now, no one is going to tell me that I can't.

So I hope others can post their positive stories for others to gain strength from.

God Bless.

[Seasha]

I'm thinking these boards may be biased toward suffering if others have similar feelings as me, so in honor of my friend and her struggles, I would like to invite you all to post your achievements despite MS.

Welcome to MSWorld and congratulations on all your achievements despite having MS! Like Kitop says, you are an inspiration for us. Many here are not so unfortunate as the randomness of MS is so perplexing. But we are here to support all who are doing well and all who aren't.

I was fortunate to have a good 20 years of doing all I could when I could. I am so glad I didn't let MS get in the way at the time. There were stumbling blocks along the way, for sure, but I had a good career, raised a family and helped build a house (in Alaska!), climbed mountains, fished on our boat and have had a veggie garden for over 40 years now (still gardening, although limited) I am SPMS now, but feel very blessed and fortunate that I had many productive years. I now have to take each day as it comes - and honestly, some are really, really hard. But I still have friends who haven't given up on me, a supportive family, my faith and my warrior spirit

Hold onto your dreams and never give up! MS doesn't necessarily mean it's a death sentence! We all die eventually - some earlier than others, but while we're here on earth, we need to be warriors no matter what we do. I've always told my kids that it doesn't matter what you do with your life's achievements, it's How you do it - with grace, integrity, and perseverance.

Thank you for sharing your message, thatgirl. Good luck to you and your friend.

[Mamabug]

We all get to decide how happy we will, or, won't, be. I've met happy people with tough situations, and unhappy people with fairly good lives. it's all in our perspective. Good for you.

[aitch10]

This is tricky. The first few years after my DX I started and completed my Master's. A few years after that I got married and had two kids. I've deteriorated over the past few years - I'm now disabled. BUT... I've written a novel, plan to write more, hope to get my PhD and have two boys to raise.

All good stuff - yay - but it's the luck of the draw. I'm happy by nature, am financially secure, and have an incredibly supportive husband. Without those last three things I'd find it really hard, disingenuous even, to be all "yeah! Go for your dreams! Anything is possible!"

Anyhoo, I guess my advice would be to listen, really listen, to your friend and support her with whatever she decides to do, not what you think she should want to do.

[Portia]

Aitch makes some good points, as do others, but I'll use Aitch's post as a springboard. I am not happy by nature, but am stuff happens, you just deal with it and go with the flow* by nature, which makes stress easy to deal with at least. I am not at all financially secure (hubby's job was downsized a few years ago, and he has a special and limited set of skills), and I was diagnosed while finishing my degree and student teaching (teaching= a fairly low paying job).

So, now I find myself with thousands of dollars of medical, education, and other debt, I am not teaching anymore due to state budget cuts resulting in my job being cut from full time to 3/4 time to 1/2 time in my first 4 years of teaching. There were about 10 secondary English jobs available in a one hour driving radius of my home and about 200 applicants for them. And as for hubby, well he tries but he's more of an ostrich.

So, I often wish I had been diagnosed a few years earlier so that I could have chosen a different route. Maybe a two year technical degree in a growing field, instead of following my heart and gut at the time to become a teacher of teens. I love 'em, but now I'm not even in that field anymore. I now work a quality assurance job at a pharmaceutical company, and ironically one of my struggling boys from my teaching days works there as well, in production, and makes close to what I do, hahaha. I'm salary because of my degree, and he is hourly and gets paid overtime, so he probably makes more than I do when overtime is available. He was my favorite . He still calls me Mrs. T and makes me smile. Yes, teachers do have favorites. But I digress.

My new job is a little less stressful than teaching could be at times, and I make a little more. Just a little. But my job security is just as uncertain. Anyway, so there are many things your friend may be considering now in this challenging time. And it's wise for her to consider them.

Even if my job hadn't been hit by budget cuts, I wouldn't be teaching anymore. Flares have diminished me physically and mentally in less than 10 years. Some days it's the fatigue, and some days it's the cog fog. Some days nerve pain is bad, and just to make it through those days I have to take meds that I usually only take in the evenings because they impair me. Then I struggle not to make mistakes. I jokingly say at work that I'm glad I'm just a lowly peon, but it's true. I couldn't handle much more and perform my job to my satisfaction, much less to my manager's satisfaction. Oh, I have good days, good weeks, and even good months. But you can't ignore the possibility of bad ones. It would be wise of your friend to consider all possible courses of action.

My achievements in spite of MS? I haven't given up. I still love to learn and have become more open minded. I've not lost heart while my friends have stopped calling because I don't have the energy or the constitution to go out for an evening with them. I have become more assertive. It's a good thing. I am a beginner gardener and backyard bird watcher, and I hope. I hope a lot of things. The next step, and I am working on it, is to turn my hopes into actions. I hope to get in a better physical shape. This, I've begun. I hope to begin volunteering. And I hope to improve my home, so that I can sell it and get into one without stairs. That's where I'll begin. And I'll keep hoping and trying despite it all.

[Tomjadg]

"We all get to decide how happy we will, or, won't, be. I've met happy people with tough situations, and unhappy people with fairly good lives. it's all in our perspective. "

Sorry, it has nothing to do with "perspective" or how "happy" we will be.
Everything depends on what level you are on with this miserable disease.
Those with a milder case can do much more. I would love to take hikes, but I struggle to get to my car for work, and back home.

It is what it is, and we deal with it. Everybody is different.

[Mamabug]

We have different opinions, Tom. Abraham Lincoln agrees with me. Others will agree with you. I prefer my perspective, because I enjoy having some control over my own happiness. If you wish to choose to be miserable when life throws you lemons, that is certainly your option.

“Folks are usually about as happy as they make their minds up to be.”
― Abraham Lincoln

[pennstater]

that girl,

I am really glad for you and congratulate you on your achievements.

For your friend, the best thing you can do is encourage her, let her know you will be there for her regardless. It is a tough balance between support and your friend feeling extra pressure to not let you down. You are right, emotions are raw after diagnosis, but the path for one may not be the same for another. Can she get a medical excuse to allow her to postpone PHD if need be until she is a little less emotional?

As for me, I had MS at least 13 years before diagnosis, possibly even 26, all of which was untreated. During this time, I played in multiple volleyball leagues, biked to work awhle in good weather, worked out, ran 5 and 10ks, changed careers twice, moved 3 times for career opportunities, all of which was by recruitment of former bosses/colleagues. I also had the good fortune to take 3 trips to Europe.

Since diagnosis, I bought a house and married, adopted a dog, and took two more trips to Europe. I had a decent 6 years, but last 3, have been progressing. I had to stop work but have been fortunate to spend more time with elderly parents.

As my neuro said to me " you have had MS most likely over 40% of your life and possible even over 70% - you have been fortunate and we will do everything we can to try to keep it that way". I may not be able to do what I could before, but my definition of achievement has changed, which is OK.

I wish you and you friend all the best.

[Thinkimjob]

Have to agree with Tomjadg. You can try to be as positive as you like about stuff.

Yes, my leg has just been cut off, I'll learn to deal with it.

But it doesn't change the fact that your leg has been cut off, and no amount of perky thinking is going to grow you a new one.

I get very about the idea that, "if you only had a positive attitude, your MS would be better".

IMHO, a positive attitude means taking your drugs, not drinking yourself to death, and doing your best with exercise and diet.

Seem to remember a study "they" did about breast cancer and whether survival rates were improved by a positive attitude. Apparently not.

The pressure to be endlessly positive caused a lot of stress, and people felt guilty if they weren't "winning the battle" or couldn't maintain their smiley face in public.

I think maybe that is what a lot of the "positive attitude" thing is about - not worrying other people.

[Tomjadg]

Mamabug

Thanks for reading into things that don't exist. I never said I was "miserable". I called the disease miserable.

What Lincoln said has nothing to do with illness, but you continue to see what you want.